When the VOICES of Black Women pilot study launched in 2023, its co-principal investigator Lauren McCullough, PhD, MSPH, was the first participant to sign up.
The study, initiated by the American Cancer Society (ACS), aims to explore environmental and behavioural factors that influence cancer risk and outcomes in a cohort of more than 100 000 black women, making it the largest ever research initiative involving this population.
In the coming years, reports JAMA Network, the study will enrol tens of thousands of these women between the ages of 25 and 55 who do not have a history of cancer. The goal: to better understand the specific drivers of cancer in this group and to inform approaches to address cancer disparities.
The study will take place across 20 states and the District of Columbia, where collectively more than 90% of black women in the US live.
The participants will be followed up for 30 years. To start, they’ll take an hour-long online survey on their health histories, behaviour, and lifestyle, ranging from diet and exercise to sleep to tattoos, and daily lived experiences like discrimination and workplace interactions.
Thereafter, they can expect two 30-minute touch points annually to provide updates on their health and lifestyle, as well as opportunities to participate in smaller ancillary studies. And researchers will continue to follow up with those participants who are diagnosed with cancer.
“These studies last for decades, or as long as women choose to engage with us,” said McCullough, who is an associate professor of epidemiology at Emory University’s Rollins School of Public Health. “We’re hoping, by only being an hour investment per year, women will choose to engage for the long haul.”
Expanding the knowledge base
Lisa Newman, MD, MPH, chief of the division of breast surgery at Weill Cornell Medicine/NewYork-Presbyterian Hospital Network, called the study’s focus “long overdue”.
For most cancers, black people have the highest rate of death and live the shortest amount of time after a diagnosis compared with all other racial or ethnic groups in the US. And although black women are less likely than white women to be diagnosed with breast cancer, they are 41% more likely to die of it.
Over the past decades, the ACS has carried out broader research efforts like its ongoing Cancer Prevention Study 2 and 3, both of which include black women. However, Newman, who investigates breast cancer disparities related to race and ethnicity and is not involved with the VOICES study, said the new initiative would advance the knowledge on this under-represented population.
“Most cancer research studies are statistically underpowered in addressing variation in risk and outcomes for black women,” Newman said. “By focusing on a large-scale population of African American women from diverse backgrounds and regions that will be followed for many years, the VOICES study will fill this major gap in cancer epidemiology.”
The National Institutes of Health-funded Black Women’s Health Study (BWHS), launched in 1995, represented a major step toward understanding the population’s overall health. The initiative enrolled 59 000 participants with outreach to professional organisations and Essence magazine subscribers, and was the largest study of black women to date.
But the VOICES investigators intend to enrol an even larger, more recent sample of the US population with a sharp focus on cancer.
“A cohort from 1995 has very different experiences than the women we will be recruiting,” said McCullough, who also serves on the BWHS advisory board. “So you can kind of think of (VOICES) as an extension, building upon the information that we’ve gleaned.”
Beyond its unprecedented target enrolment, the study will be unique in its investigation of less understood environmental and behavioural factors that may disproportionately affect black women’s risk of cancer.
For example, certain beauty products predominantly used by black women, such as hair dye and chemical hair straightener, have been associated with a higher risk of breast cancer. The researchers will also explore factors such as generational wealth, social support and discrimination.
Throughout the survey, McCullough said there will be opportunities for written, qualitative elaboration through which participants can share lived experiences.
Even more may be learned from the optional VOICES of Black Women Blood Substudy, which will invite participants to provide a blood sample, as well as blood pressure, height, weight, and waist measurements and survey answers about recent exposures and behaviours. Researchers will use the blood samples to understand how factors such as ancestry, genetic changes, hormones, infections, or environmental pollutants and toxins may influence cancer risk.
“The hope is that some of the discoveries made will be used to guide policy or public health practice and medical interventions so that we can begin to narrow these gaps that have existed and persisted for decades,” McCullough said.
Building trust
The study’s ambitious recruitment target will be its greatest challenge, noted Tiffany Carson, PhD, MPH, who serves on the VOICES scientific advisory board and is programme leader of the Health Outcomes and Behaviour Programme at the Moffitt Cancer Centre in Tampa, Florida.
“There’s a history of mistrust,” Carson said, citing past mistreatment and under-representation of black women in research and medicine. “So there has to be work done to repair that relationship.”
Carson and her fellow advisory board members, a team of black women cross-disciplinary experts, are helping to guide these efforts. She said their role involves assisting the research team in building trust in the community and ensuring appropriate study design and survey question language.
Carson said the board was also helping to devise effective enrolment strategies, such as leveraging social media and partnering with organisations and events that have a presence in the black community, such as Jack and Jill of America and Historically Black Colleges and Universities homecomings.
Because the study’s direct benefits may not be immediately obvious to prospective participants, Carson said the team must also make their target population aware of the scope of its long-term benefits and the importance of staying engaged with the project.
The team’s goal is to complete enrolment by 2027, but McCullough said meaningful research can begin as soon as 10 000 participants are on board. So far, nearly 3 000 women have enrolled.
In the meantime, McCullough is focusing on dismantling fears and encouraging enrolment by sharing her own reasons for enrolling in the study.
“Not only will it be informative for the generation of women who choose to join us, but it’s going to be informative for generations of women who come after them,” she said. “And my question to people is always: ‘If not you, then who?’”
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